Women suffering in silence: The endometriosis crisis

There's a little-known but extremely common disease afflicting 1 in every 10 women in the United States and costing the nation an estimated $119 billion annually. Many women struggle in silence, not even knowing they have it. The disorder is known as endometriosis and can affect women of all ages.

"So many women are unhappy. They lose work time; they lose productivity; they lose their jobs because of this disease," said Dr. Tamer Seckin, a renowned New York City–based gynecologist and endometriosis surgeon. "They shouldn't be discriminated because they have this condition."The $119 billion cost estimate assumes 10 percent prevalence rate of endometriosis among women of reproductive age. Globally, endometriosis affects at least 176 million women, and experts believe the real number is higher due to undiagnosed cases. "Endometriosis imposes a substantial economic burden on society, mainly related to productivity loss," wrote researchers for Oxford Journals' Human Reproduction Update. Endometriosis occurs when uterine tissue grows outside the uterus, potentially affecting other organs and oftentimes causing severe pain, especially before and during a woman's menstrual cycle. Symptoms include debilitating pain, infertility, changes in mood, painful sex and other issues that may interfere with daily life.

This painful disorder causes women to lose, on average, 10 hours of work per week, or one workday, to rest and see doctors, according to a study on lost workplace productivity. Women are oftentimes misdiagnosed, resulting in delayed treatment — and costs have been rising steadily: the estimated tab attributed to lost productivity and other factors was $22 billion in 2002.Lack of funding, research and awareness surrounding endometriosis are key issues. Some critics have gone so far as to call the lack of funding criminal.

Physicians, experts and celebrities are speaking out, including actresses Lena Dunham, Susan Sarandon and Whoopi Goldberg, who have shared their personal stories about struggling with this condition.

Seckin said that about 95 percent of the patients he has seen have already had at least one surgery for symptoms that range from back and pelvic pain to nausea to infertility (which is often related to endometriosis but goes undiagnosed)."One patient I have had spent over $250,000 on fertility treatments because her doctor never tested her for endometriosis. Another patient had a hysterectomy at 19 years old. It's outrageous." Seckin added, "You can live with [endometriosis]; it won't kill you, really, because it's a benign disease. However, it acts like a malignant disease because it invades the most productive portion of someone's life."

Studies do show that those who suffer from endometriosis are also at higher risk of getting ovarian cancer and heart disease, according to the American Heart Association and independent researchers.

"It's one of those things that women don't talk about, and so anything you can do to help them come forward and find out and get diagnosed and get treatment before it turns into something really horrible I think is really important," said Susan Sarandon, who also has the disease.

Seckin, along with supermodel, author and "Top Chef" co-host Padma Lakshmi, who was diagnosed with endometriosis at the age of 36, founded the Endometriosis Foundation of America in the hopes of raising money and awareness about the disease.

'What's wrong with you?'

"There were years when my friends just thought I was the girl that got the stomachache all the time and probably equated it with me being neurotic and me just being generally antisocial," Lena Dunham, who struggles with endometriosis, told CNBC at an event called the "Blossom Ball" that honored her decision to go public about her private struggle.

Dunham has written about her harrowing experience not knowing what was wrong with her for over a decade. "While endometriosis affects 1 out of every 10 women, only a fraction of those cases will ever be diagnosed," Dunham said. "Many will be dismissed as having mere menstrual pain or, worse yet, some modern version of hysteria."

Lakshmi said, "If I had been diagnosed at 16 or 26 or even 32, I would have gained valuable time. I would have been able to be more present for my family and friends … [had] a greater capacity to advance professionally, and I would have also had a greater capacity for intimacy."

Lakshmi has also been public about the fact that having endometriosis was a major factor in the dissolution of her marriage to author Salman Rushdie in 2007.

Jhumka Gupta, a social epidemiologist and assistant professor at George Mason University, Department of Global and Community Health, said the same societal attitudes that dismiss, victim-blame and stigmatize other important public health issues faced by women, such as sexual assault or postpartum depression (subjects she has studied), also are at play when it comes to endometriosis.

"The difference is, endometriosis is virtually absent from public health and social justice advocacy agendas," Gupta said. "The medical and public health communities and society at large are either uninformed or misinformed."

Endometriosis sufferers and experts who spoke with CNBC said "What's wrong with you?" is a question that women with endometriosis hate to hear.Gupta said workplace advocacy remains behind the curve. Women and girls who suffer from endometriosis may not be willing to openly discuss their challenges and request accommodations without fear of being dismissed or ostracized by colleagues or managers.

"Discussions about 'Leaning In' tend to focus on women, self-confidence and career challenges women may face once they become parents. However, these high-profile discussions rarely ever include career challenges faced by women who have debilitating health issues that are linked — scientifically, medically or otherwise — in the public's mind to a 'woman's problem' such as menstruation," Gupta said. "No one wants to let you take time off because of what they perceive as just a bad period."

"While endometriosis affects 1 out of every 10 women, only a fraction of those cases will ever be diagnosed. Many will be dismissed as having mere menstrual pain or, worse yet, some modern version of hysteria."

-Lena Dunham, writer, actress, director

A big part of the problem is the difficulty doctors face in trying to diagnose endometriosis. There is no case of endometriosis being diagnosed with an MRI, one of the most comprehensive imaging tests, experts told CNBC.

A group of researchers and physicians are currently conducting the ROSE (Research Outsmarts Endometriosis) study, which aims to "develop an understanding of the types of cells (and their genetic/genomic characteristics) that initiate endometriosis lesions," according to Peter K. Gregersen, principal investigator and head of the Boas Center for Genomics and Human Genetics at the Feinstein Institute.

"This may then lead us to early diagnostics, so that we can tell a young woman with symptoms whether she is likely to have endo and should be further evaluated," Gregersen said.

It is also one of the only diseases that can be definitively diagnosed through laparoscopic surgery, which helps to explain an average seven- to 10-year delay in diagnosis.

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